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Planning a holiday with a child as medically complex as Hugh can be somewhat challenging to say the least. When he was really ill, I was too scared to even leave the house to go to the park so a holiday was the last thing on our minds. Yet with the support of our wonderful palliative community nurse who broached the subject tactfully, yet repeatedly, we began to think that maybe it was an option. Holidays are all about making memories and spending time together as a family, away from the stresses and strains of day-to-day life.

OK, we’d take a significant number of those stresses and strains with us (and I don’t just mean the husband!) but the mundane day to day reality could be left behind. We agreed with our nurse that it was important for Sean, Hugh’s older brother, to have the normality of a family holiday and that it would be good for us as a family to just get away from it all.

How though, how do you travel anywhere with a medically fragile child? Well you plan. And you plan. And then you plan some more. We explored every outcome, every possibility, every potential emergency and how it could be dealt with. We’d go somewhere by the sea so it felt like a ‘real’ holiday but not so far from home that we couldn’t get back quickly should we need to. We’d find somewhere with decent local hospitals and good emergency departments. I took to the internet and searched for hospitals in various locations. I asked in Facebook forums about the children’s wards. And we chose a holiday destination equidistant from two major hospitals with good emergency facilities. We printed letters from Hugh’s paediatrician, detailing his condition. We had an extremely comprehensive seizure management plan drawn up. Hugh’s community nurse wrote three A4 pages containing everything you could ever possibly need to know about Hugh – from the different medications, strengths and doses he was on, to his known allergies; previous treatments and operations, to how he presented with different illnesses and suggested responses. We printed contact details for the majority of his medical team and filed it all in an envelope marked ‘In Case of Emergency’.

We contacted the holiday park to declare that we’d have oxygen with us and asked about insurance for that. We discussed with them how an ambulance would find our specific caravan, the average wait for an ambulance and the transfer time to hospital. We asked about the medical training of the staff on site. We’d be travelling by car, so we would be able to bring all the medical equipment we’d need with us, however I contacted the oxygen supplier and the enteral feed supplier to discuss options should we run low and need additional supplies. The lists of what we needed to bring were endless – we checked and triple checked them: sats monitor, sats probes, travel oxygen, nasal cannulas, oxygen mask, bag and mask, suction machine, nebuliser, feeding pump ... and spares of everything. We packed boxes and boxes and boxes of feeds and medication and syringes. Hugh’s wheelchair took up an inordinate amount of room in the car, squished in alongside that was the P-Pod – a wonderful specialist moulded beanbag so that Hugh had somewhere to sit in the caravan. With all the medical and feeding equipment wedged in too, there was barely enough room for clothes.

The accommodation didn’t need to be accessible, since Hugh was only two and a half. We could still easily lift him in and out of most places. Beds weren’t so much of an issue either, with carefully placed pillows he could be kept safe in a single bed. These however are issues that will certainly affect future holiday choices. Carefully and meticulously we planned every last detail of that first holiday and still our nerves were stretched. We’d been to Ireland with him in the past but since he’d become seriously ill we’d rarely travelled any distance at all. What if he stopped breathing while we were on the motorway? What if he got sick while we were on the beach? What if? What if? What if? ... There was only so much we could control, for everything else we tried to plan in advance what we’d do.

It was nerve-wracking and mentally exhausting. Organising that holiday wasn’t easy but I’m so glad we did. The benefits for Sean, for our whole family, far outweighed the difficulties. The holiday itself was amazing and worth every minute of planning. The sun shone every single day and there was rarely a cloud in the sky. We built sandcastles on the beach and chilled out in the sun. We had coastal walks together and splashed in the sea. Sean danced and danced to the evening entertainment. The boys shared a bedroom for the first time.